When disability bleeds into a pandemic

[Content warning: discussion of heavy mental illness and the pandemic.] As “the new normal” becomes a buzz phrase, I think about how none of this is new or normal for me.

I spent most of 2019 living in a haze. 

When I try to think about good things that happened last year—and surely there were many—I either draw a blank, or I pull up happiness like it were fact. I think, “Here is an ambiguous memory from sometime in the year,” and I think, “Here is objective knowledge of what a good memory might feel like.” I hold both thoughts in my head, but the threads between them are just fog.

The day I approached my therapist about my patches of “memory loss,” I didn’t have those descriptions yet. I only told her that chunks of my life were missing: some recent (most of Feb and March last year) and some old (most of my childhood).

I told her it was less of an interference in my life and more of an odd, missing feeling I got when I found out other people didn’t go through life like that. I had listened to people describe their childhood memories, with cousins they hadn’t seen in years or playground pals from two or three meetings. They spoke of it like these things only happened to them last week.

Doctora asked me some more questions, and as she reached out for a questionnaire for me to fill out, she said, “I think you know where I’m going with this—what theory I’m testing.”

When she told me about ADHD/ADD, she said it in words that explained so much of my life: “I don’t think you’re forgetting. I think you weren’t paying attention, you weren’t present when it happened.”

It felt like windows and pathways opening up somewhere in my mind. Points A through E felt connected for the first time (even if I had no clue what they ever stood for) and I knew that the rest of the dots would follow over the next few hours.

All the same, I felt hurt. Imagine being told that you missed out on so much of your own life because your mind didn’t know how to be there. I wondered (kind of stupidly, really) if things would henceforth be different now that I had this knowledge. I imagined that my mind and I were now aware of our struggles to be present, and would slowly self-correct.

I accumulate baggage, even when I’m not really living.

That session happened thirteen months ago. Part of processing the news was deciding to leave my then job. I didn’t know it then, but the setting was this chop suey of the best and worst roles you could give a person with ADHD. It was fast-paced, active and ambitious, but very little of it was really in my control.

I slipped in and out of denial. First, I obsessed with things within my power, or things that I pretended were. Most of these things were small and short-lived, and they wore me down. I tried to get with the program and accept things I disliked or disagreed with. I compartmentalized, submitted…and grew absent. Like a ghost unaware she had become one.

Even after I made the difficult (but apparently correct) decision of walking away, I was too far gone into that deep, foggy absence to materialize again. There’s an irrational escapism to it too. For the first time in my life, my head was kind of quiet, something that I’d spent my most anxious years praying through tears for.

I lived this way for a while—if I could really call it living at all. Mind quiet even as it was buzzing, eyes distant, ears distracted, and heart refusing to be present now that it knew what it was like to keep to itself.

But the worst part, like the worst part of all my missing time, was that the weeks swished on by whether I was keeping the memory or not. By the time I find my footing (if I ever do), I’ll start my life over carrying debts from this one: money, time, affection, connection, apologies, retributions, compromises. Not really living is much costlier than living.

There’s nothing new or normal about this.

One thing that’s different in 2020 is people joining my wavelength. Most people are just as spacey and unsure, forgetful of reality, and always cooping up to cope through pure survival instinct. I’m just as cloudy-brained as ever, but now, with quarantine, most everyone is too. Or so people post.

Even if I’m told we’re all in this together and experiencing the same absence, I feel guilty. Even when everyone’s not handling it well, I seem to be handling it the worst of everyone. I feel the most faraway, the least adaptible to the “new normal,” the one most likely to be caught struggling because I was the worst at pretending I wasn’t.

And even though I’m still not present, I can somehow see everything. This year has been a long lesson in knowing, remembering, observing—just holding a memory or a thought without judgment or analysis. I had several vivid dreams about people no longer in my life (Thank you Venus Rx) but I felt with full force the way I used to feel about them. Even after I woke up, there was no processing or interpretation to be done, no life lesson to bring into the day. I was just remembering.

It feels like standing on a nothing plane and watching reality through frosted glass. I can’t touch and I can’t figure out what I’m looking at: I can only look. Sometimes, I’m allowed to feel something for it. 

I have been in a hurry to heal and grow that I try to force the lesson and the insight from everything. Preferably something I can make into art. But if I force a conclusion, insight or meaning, I get pulled back into absence.

The year presented me with experience after experience, not a single one of them leaving me a better person. I went joined online batch reunions, only to realize how much life and memory I truly lost. I tried to reconnect with once-upon-a-time best friends, only to give up because not all connections are stubborn. And I, of course, watched in horror as the world and my country devolved, only to feel so incredibly small and lost.

This year has made me know more, and all I can do is know it.

I can see the work but it’s just out of reach.

In the past year since my diagnosis, I’ve followed more disability advocates online. Content creators with ADHD seem to run in close circles with autistic, chronically ill, or similarly afflicted personalities, at least online. They have similar values and overlapping causes. I’ve formed some new ideas about the plight of the disabled, how we (and yes, I’ve since embraced my place in that world) are overlooked by even the most well-meaning social justice activists.

The world was simply not built with the afflicted, disadvantaged and imperfectly functioning in mind. And as long as that’s true, my life will be difficult by default. It makes me feel so helpless and paralyzed. It makes the fog so inviting to stay in.

Worse still, I’m haunted by the truth of struggle, pain, and even cruelty every day. I know there is change to be demanded, there are voices to amplify, and there is righteous rage to be expressed. But I’ve so long been made to feel too unqualified, or too inconsistent the few times that I’m qualified. 

I don’t know what more to do than sit on my nothing plane and gape through my frosted glass and look. I stare at the reality that I equal parts live in and don’t. I can’t control it, and I can’t walk away from it. I won’t submit to it but there’s nothing to learn from it. I can only look at it.

So I look, and I look, and I look.

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